Burning Nights CRPS Support is a UK national charity dedicated to raising awareness of Complex Regional Pain Syndrome (CRPS)
Learning Acceptance for CRPS/RSD and Chronic Pain | Burning Nights CRPS Support

Learning Acceptance for CRPS/RSD & Chronic Pain

2018-05-06
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Learning Acceptance for CRPS/RSD & Chronic Pain

 

Having a chronic condition like Complex Regional Pain Syndrome (CRPS), formerly Reflex Sympathetic Dystrophy (RSD), or chronic pain can cause anger, trauma, upset, a sense of loss as well as the pain. These are totally normal feelings and almost everyone will get one of these feelings at some point in their chronic pain journey. You are actually suffering with a sense of the loss of your old life and you need to learn to move to a new way of coping. There are usually 2 ways that CRPS patients will do, which is either to choose to cope with their chronic pain or CRPS/RSD or they choose acceptance for their CRPS or chronic pain. This blog deals with learning acceptance for CRPS/RSD or chronic pain.

 

Learning acceptance for CRPS and chronic pain can take patients months or years to finally accept their chronic condition. This blog goes through the many stages a patient goes through when trying to reach the acceptance goal. Learn more via Burning Nights CRPS Support

Learning Acceptance for CRPS & Chronic Pain | Burning Nights CRPS Support

 

By accepting your CRPS or chronic pain is having to accept that your way of life has changed and that your condition is a very much permanent part of your life now. This is the one of the hardest things you will do when faced with a diagnosis of Complex Regional Pain Syndrome or chronic pain in general. You need to learn to accept that you have your chronic pain or CRPS permanently and it can’t be changed but it can be managed so you can have some quality of life. This will be the most difficult thing to overcome in your ‘new‘ life living with a chronic condition like CRPS. However, you will go through various stages just like you’ve had a major loss. You have had a loss – loss of your old life.

 

Acceptance for CRPS RSD and chronic pain.

Acceptance for CRPS RSD and chronic pain.

 

When first diagnosed with chronic pain, patients will tend to completely avoid wanting to understand about it (McCracken, L.M), won’t want to find effective treatments, therefore almost blocking it out of mind. However coming to terms with your chronic pain or CRPS is a very vital process of living your life. Acceptance isn’t just a function of having a low level of pain (McCracken, L.M. 1998). Some people will struggle to come to terms with their pain and not move on with their life, others will do the opposite and be very open and optimistic and therefore will actively seek out treatments and want to live their life. Accepting your chronic pain or CRPS/RSD is not giving up in anyway and it is not a negative thing instead think of acceptance as taking the next step and taking your chronic pain with you.

 

According to McCracken, L.M. (Ruehlman, L.2014)

Acceptance of pain is thought to reduce unsuccessful attempts to avoid or control pain and thus focus on engaging in valued activities and pursuing meaningful goals.”

In recent research (Moore, H. et al. 2015) and in Cho, S. et al (2012) it has shown that acceptance

may be associated with better tolerance of pain.

 

Again, in some fairly recent research studies, it has been shown that chronic pain acceptance although difficult to achieve is convincingly linked with better and more long term results including lessening the effects of stress and suffering. According to Fish, R. et al. (2010) Acceptance is 

being willing to experience pain without trying to avoid it, control it or reduce it.

 

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What Exactly Is Acceptance For CRPS/RSD and Chronic Pain?

When you have any long term condition such as CRPS or chronic pain, it always seems a very long road and you may think that your life’s over and you can’t carry on or you just simply want to give it all up. This is a common misconception. Acceptance is not actually asking you to give it all up or that your life is over. Instead acceptance for CRPS/RSD and chronic pain is giving you a chance to give you some quality of life and to continue with your life and your social activities, move on from trying to find that cure or specific treatment that will virtually make the CRPS or chronic pain disappear and carry on despite the pain that you have.

 

Acceptance for CRPS/RSD and Chronic Pain | Burning Nights CRPS Support | Victoria Abbott-Fleming quote on acceptance for CRPS

 

It will take time finding acceptance won’t happen quickly overnight. You must realise that it will also take some hard work on your part! Have you had thoughts like:

I have to find a cure!

I need to find another doctor or consultant who actually knows about CRPS/RSD

Surely there’s an answer to all this burning and agony I’m in?

Is there another specialist that can help?

I must find a treatment that can help

Maybe if I tried this treatment or that treatment I will be free of this pain?

There’s going to be something out there, isn’t there?

 

All of these thoughts are not helping you move your life forward with your chronic pain or CRPS/RSD. It is only with accepting that there won’t be a cure or treatment tomorrow or next week or next month, there isn’t another doctor or specialist that has that magic wand or perfect answer to help you. Many people have looked everywhere UK, USA, Europe, Australia but have never found that perfect answer. But if you learn to accept that your CRPS or chronic pain is here to stay and is real and your life is worth more than just trying to find that final answer that will get you out of all this pain, it is then and only then that you can move on despite the pain.

 

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Acceptance of CRPS/RSD and chronic pain - 5 stages of acceptance

Acceptance of CRPS/RSD and chronic pain – 5 stages of acceptance

The 5 Stages of Acceptance

According to numerous sources there are 5 steps or stages of acceptance. They were developed by Elizabeth Kubler-Ross mainly for grief and loss during her work with the terminally ill. However because chronic pain and CRPS are in fact a loss of your old life because of the chronic pain or condition, you will grieve and go through the stages just like as if you have lost someone. The stages are not time bound or indeed don’t have to be done chronologically but they are guide to show your the various stages that you may go through when faced with a diagnosis of CRPS and chronic pain. The 5 stages are:

  • DENIAL
  • ANGER
  • BARGAINING
  • DEPRESSION
  • ACCEPTANCE

 

Acceptance for CRPS RSD and chronic pain - Denial

Acceptance for CRPS RSD and chronic pain – Denial

 

DENIAL

Denial is the 1st stage that having a chronic condition like CRPS/RSD or chronic pain will go through. This you will probably find is the most well-known. Have you ever had thoughts of:

‘the pain isn’t affecting me’

‘I’m alright, there’s nothing wrong with me’

‘I can still work, I don’t have CRPS/RSD or chronic pain’

 

These are all classic cases of DENIAL. You are denying the fact that you and your life have been affected by this condition or by chronic pain. When someone is told of something like having chronic pain for life or a diagnosis of CRPS/RSD, Fibromyalgia or CFS/ME, the first and most natural response is to deny its existencedeny it ever happened or say that the doctor has got it all wrong. There is no time frame for this stage, denial can last as long as you allow yourself to have these thoughts and feelings. Due to having a deep sense of denial, some sufferers will deny the existence of chronic pain or CRPS that they won’t take the important and very necessary arrangements in finding treatment and seeing the right doctors for that condition.

 

According to WedMD they say: 

 “As we move through the experience and slowly acknowledge its impact, the initial denial and disbelief fades.”


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ANGER

The 2nd stage is ANGER which is an important part of the steps in achieving acceptance. You may be angry at your family and friends for not understanding or believing what you are going through or you may get angry at the doctor who diagnosed you for telling you that you had chronic pain or CRPS and that you have it for life or anger pointed towards the medical profession for not diagnosing you sooner. You try to find someone to blame for what has happened to you whether it be your place of work, the doctors or medical profession, the surgeon or the person who caused the accident. You may have other feelings like inability to find out information or comprehend the condition. You may at some time point your anger towards yourself, so you wonder what you have done to deserve this or why has it got to be you. Even though this is a common stage it is important not to stay in this stage for too long as anger can bring about stress, depression, bitterness or isolation from friends, family or loved ones, thereby causing you more problems and possibly even more pain.

 

BARGAINING

The 3rd part of Acceptance is BARGAINING. This is where you make a deal or trade with yourself or God that if you do something good then your chronic pain or CRPS will go or things will alter. You are trying to find a way back to your old life and how things were for you before the CRPS and chronic pain. You may possibly have thoughts of what ‘could have been done’ to prevent your injury or chronic pain from occurring. You could have thoughts like ‘only 1 day or afternoon without medication will be OK.’ None of these thoughts will ever materialise, as there is no cure for CRPS or for chronic pain.

 

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Acceptance for CRPS RSD and Chronic Pain - Depression

Acceptance for CRPS RSD and Chronic Pain – Depression

 

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DEPRESSION

DEPRESSION is the 4th stage of the process and it is this time that you have realised your chronic pain or CRPS won’t go away, that you have chronic pain or CRPS/RSD and that you have it for the rest of your life. This is the stage that people will tend to remain in the longest as it is the most difficult to get through. There are feelings of sadness, loss, desperation, anxiety, isolation or vulnerability that people can have. People will begin to withdraw as they see no point in doing things, living, seeing or talking to friends, family or loved ones. No joy or love of life can be found for people going through this stage and no way out can be found, it will seem to last forever.

Depression can totally consume you and your life and it is very important that if you find yourself or you see a loved one, friend or family member going deeper and deeper into depression or there any suicidal thoughts or intentions, seek medical attention right away. When diagnosed with chronic pain or CRPS/RSD and you enter this depression stage you are effectively grieving for your old life and the loss of all the things you used to enjoy doing. It is totally OK to have a cry or to feel sad, it is all part of the process. It is important to learn that you are bound to have your bad days as well as your good days, as the process of Acceptance won’t be smooth sailing all of the time, it will take a little patience and understanding. It is at around this is the time when you should start to talk with other chronic pain and CRPS patients on the Burning Nights CRPS Support forum for example.

There are a few common signs of depression, here are some of them:

  • Constantly feeling down or sad
  • Feelings of hopelessness
  • Pessimism
  • Poor concentration
  • Difficulty making decisions
  • Loss of interest
  • Drinking more alcohol than you usually do
  • Loss of energy
  • Too much sleep or not enough
  • Loss of appetite or over-eating
  • Angry feelings, bad-tempered or irritable
  • Thoughts and feelings of suicide and not wanting to go on (Please seek professional medical attention or counselling right away if you have thoughts like this)

 

Acceptance for CRPS/RSD and chronic pain - Acceptance

Acceptance for CRPS/RSD and chronic pain – Acceptance

 

ACCEPTANCE

The Final stage of this process is ACCEPTANCE and it is at this point that you begin to realise that you have a limit to what you are able to do now in your new life. The aim of this step is to find/learn acceptance of your CRPS/RSD or chronic pain. You have now found that you have accepted your condition or chronic pain into your life and it is a part of you that will remain for the rest of your life. McCracken (1998) found that patients with more accepting responses to chronic pain showed better adjustment as measured by the self-report of depression, anxiety, and disability. Acceptance does not mean that your life is over and that you have to give everything up or give up looking for different treatments or a cure because of the chronic pain or CRPS but you have realised the reality of it and you can still look for different doctors or treatments or a cure. Cho, S. et al (2012) stated that given the intractable nature of CRPS-I, the findings suggest that patients with CRPS-I may benefit from responding to pain with acceptance.

Your new life will be different and the way you have to do things will be different to the way you did things before it all happened. You will begin to heal emotionally and mentally once you have understood that this is your new path that you will follow, this is the important part. By incorporating your CRPS or chronic pain into things you do will help you heal and start to take control back over your life instead of allowing the chronic pain or CRPS to continue to take it over.

Please try and remember that just like other stages especially depression, you may feel down, upset, sad or depressed on 1 day and then have a good day the next. Not every day will be perfect it is completely OK to feel depressed or sad or angry because the Acceptance process steps do change and just like CRPS not everyone will go through every step in order and not everyone will go though every single step, some will miss out a step or 2.

 

 

 

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PLEASE REMEMBER: If you find at any time that you are dwelling and staying in one stage then seek medical advice and explain your feelings to your doctor or counsellor, they will try to help you move on from that stage to help you move towards acceptance. Remember there are no time frames or instructions and there’s no right or wrong way to reach your final aim of acceptance.

 

Hopefully now you have read this blog about learning acceptance for CRPS/RSD and chronic pain, you can hopefully now begin to realise or understand that it is totally possible to live your life even with CRPS and chronic pain and that all those thoughts you’ve had since your incident occurred are perfectly normal and it is a process that sufferers have to go though. Please feel free to comment, post or share on Social Media. How long did it take you to learn acceptance for your CRPS or chronic pain?

 

P.S. Have you read our coping strategies for CRPS or chronic pain blog yet?

 

*Please remember that this blog is an informative resource only. It is not intended nor implied that it is a substitute for medical advice or professional psychological treatment.*

 

CITED RESEARCH

 

ESSENTIAL WEBSITES

Last Updated: 01/03/2018

 

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About the Author
I'm a barrister, advocate & sufferer of Complex Regional Pain Syndrome (CRPS). I am also a bilateral (double) above knee amputee due to aggressive symptoms of CRPS. However I want to help all those affected by this devastating condition which includes those living with CRPS, their loved ones, families, carers and friends. Please help spread awareness of this debilitating and life-changing condition - CRPS. We need your support!
  1. Zoe Masters

    Hi burning nights
    I felt I had to put a comment on here because I am going through these stages right now after my diagnosis of CRPS last year. Thank you for talking about this subject I think it’s so important that we understand what we’re all going through and this blog is the great to learn that I’m not different or my feelings are not weird! I am normal!

    Thank you burning nights for doing this important subject!
    Cheers Zoe

  2. Irene Bull

    Well as always a great piece of work By Burning Nights a lot of research has gone into this article. Really found it interesting to read and most useful. People should read this great piece of work I think it should be published as I am sure it would help people diagnosed with CRPS/RSD and Chronic pain.
    Thank you for this brilliant article.

  3. Pam

    I’ve been battling RSD for over14 years now and highly recommend newly diagnosed patients find an experienced psychiatrist or counselor to help with the stages of acceptance. We must surround ourselves with the very best Doctors to help and empower us. I also recommend leaning on God. Science is great but who knows everything about everything? God! Prayer and support through your church is equally important to your healing. God bless each and everyone that has been touched by this awful disease!

  4. Trish

    i have just found this site and it’s amazing thank you burning nights I have had CRPS for 2 years now and despite having accepted it I still have bouts of anger or depression but I don’t see this as being any different to those without crps life is hard and sometimes we get knocked down.
    Not searching for answers has been my method since I got diagnosed I love to have knowledge and do read a lot of articles but I am also trying to make the most of my life I have. I wondered do you have any plans of a seminar or get together for sufferers of crps to get to meet each other and share stories with maybe some guest speakers? If you do I would be very interested in attending. I think the biggest struggle I still have is not being able to talk to someone that has the condition that fully gets me! My partner is amazing and very supportive and everyone tries their best and I’m very lucky but meeting others I just think would be amazing. Good luck everyone

  5. Victoria Abbott-Fleming

    Hi Trish,
    Thank you so much for your recent comment and I’m sorry to read about your CRPS 🙁 I, really pleased that you seem to have the help and support from your partner which is so important as this condition can have a terrible effect on people’s lives and not just their own, it affects all of those around the sufferer.

    It’s brilliant that you read numerous articles and if you do find any that you think we should read, then please do email it to me on victoria@chronicpaincrps.com

    As for Seminars or get together, Burning Nights is still quite new, however I will be planning a get together with guest speakers at some point in the near future as I would like an opportunity for sufferers around the country to be together even if it’s a full day or a couple of days.

    Please do feel free to join the Burning Nights Forum to ‘meet’ other sufferers in a forum basis which may help you or your partner at any time. There is a section for carers, loved ones, family & friends.

    But many thanks for your comments and I appreciate them very much 🙂

    Best Wishes & hoping you’re having a low pain day
    Victoria xx

  6. Lysa

    Thank you for all of the hats work that went into this post. I was diagnosed with RSD/CRPS 3 1/2 years ago and within 6 months I was in a wheelchairs. I fought hard to get out of my wheelchair only to find myself back in it and in worse shape than before. I’m stuck in the depression stage and can’t find my way out of the darkness no matter how hard I try. I have left a message with my doctors office about getting back in to see my psychiatrist but am waiting rather impatiently. This post did help because despite the introvert I’ve become it is nice to know in not alone.

    Wishing you a beautiful evening.

    Much love,
    Lysa xx

  7. Newtransplant

    Thank you so much for this article, I’m 15 and I’m just feeing so depressed and angry, thanks for letting me know that iit’s possible to continue life with crps.

    • Victoria Abbott-Fleming

      Hi there,
      Thanks for posting and reaching out to us 🙂 Yes life is possible with CRPS albeit a new different life where you learn your limits, what you can and can’t do, learn the word ‘No’ when you can’t do things… It may seem at the moment that it’s very difficult and things seem impossible at your young age. Learning to cope is an important part of living with CRPS.

      Please do join our online forum where you are able to meet others living with CRPS. Please don’t hesitate in asking questions or sending us an email, that’s why we are here.

      We really hope that your appointment proves helpful and that you can sort out your pain levels and your sleep 🙂

      Take care & best wishes,
      Victoria from Burning Nights

  8. Kate Pollard Sparks

    Hi,
    I didn’t figure out how to turn down the volume on this monster until I changed my diet. That led me to new ways of thinking. Altho I have a ‘severe case’ according to my drs, it doesn’t stop me from having remission days, or many parts of my days, and once, a full week of remission. Followed by return of my syptoms. I’m not in excruciating pain these days. I like what I read above where a fellow journeyor said she still experiences bouts of anger and depression but she notices no difference between herself and those not afflicted. I agree with that. For adults…younger folks I think it’s worse…thanks to all of us who can share.

  9. Lauren

    I am so please to see that I’m not alone in my struggle to accept my CRPS. According to what I’ve just read I am most definitely in the depression stage. It’s very hard to imagine that I will be this way for the rest of my life and even harder to let go of the fact that I will never be who I use to be again. I am not looking for sympathy here but the truth is I have not had the support from others that I feel I should have but the reality is it’s not others that I need acceptance from it’s myself. I just want to beable to live life again but some days I just feel like I’d rather not bother.

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